The proposed project aims to improve the care processes for young people with muscular dystrophy (MD) and their families. Through pilot work, we have developed an innovative methodology that engages multidisciplinary clinical team members to collectively examine and improve how the ‘human’ dimensions of living with MD are addressed within clinical care. ‘Human’ refers to the emotional, social, and moral dimensions of illness co-existing with the medical and functional dimensions. To date we have developed a set of actionable recommendations for change in the local clinic. The proposed study aims to extend this work to advance the development of transferable skills and recommendations for MD clinical care for application across Ontario and Canada. This is a multi-site, multi-method study. The work will be informed by the perspectives of children and families, and will partner with clinicians to produce, test, and refine recommendations.
Academic Health Science Centre (AHSC) Alternate Funding Plan (AFP) Innovation Fund